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Old 11-24-2008, 09:50 AM
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BEGLET BEGLET is offline
In Memorium
 
Join Date: Sep 2006
Location: So Cali
Posts: 661
15 yr Member
BEGLET BEGLET is offline
In Memorium
BEGLET's Avatar
 
Join Date: Sep 2006
Location: So Cali
Posts: 661
15 yr Member
Default Mrs D? or anyone used Xifaxan with PN?

9 Years ago I got PN - after extensive testing, bipsies, etc. they decided it was genetice as does not respond to high dose IVIG - did have a positive amyloid biopsy, then got negative, so thats consdidered a "we're not sure" - anyway, I got C-DIfficile 9 years ago and after 6 months of treatment on flagyl and oral vanco (must be oral) - the drugs killled the infction, but also my sensory nerves, and damaged my autonomic system, so able to live only on non-lactose liquid since... I've got it again - dont know how - never take anti-b's nor have I been in the hospital - and spent the last month on vanco (at least not a nuero toxin compared to flagyl) and it did nothing except make me worse.... we're running out of meds here and I'm so underwegight after not being able to eat for so many years this is getting scary.... the doc is having me try Xifaxan - which I believe is being tested for C-Diff infections - and brutal also... have anyone taken this med or heard of it for treatment for this condition?

Help? Anyone have any experiences here?

THanks....
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